KSS Autism: Parameters and Future Care

NCT06133673 | Unknown

• 1 other identifier: V2 20/07/2023
• Study Type: observational
• Target: 30
• Locations: 1 country
• Sites: 1

Brief Summary

Referrals for autism assessment have greatly increased in the last few years. This means that waiting times are longer for families, and children and young people are struggling to get the support they need. This also means that the number of autistic children and young people there is assumed to be is not correct. A better understanding of the true number of autistic children and young people is needed so that better support for them can be provided. This research aims to understand what autism looks like in Kent, Surrey, and Sussex (KSS) to better help autistic children and young people. To do this, schools will be asked about the number of autistic children in their school to better understand the number of children and young people with autism in KSS. Secondly, autistic children and young people will be interviewed to find out about the support they need. The information gathered will help the research team to develop a quality-of-life measure, which can be used by schools to help autistic children and young people get the support they need.

Conditions

Autism; Autism Spectrum Disorder; Quality of Life

Outcome Measures

Primary Outcomes (1)

• Prevalence questionnaire

  A 6-item non-validated questionnaire that will be used to ask schools about the number of children on their school roll, the number of children with a diagnosis of autism and also other neurodevelopmental conditions.

  5 minutes

Study Arms (2)

Schools

Prevalence questionnaire data will be collected from 20 schools.

Autistic children and young people (CYP)

10 semi-structured qualitative interviews will be conducted with autistics CYP.

Eligibility Criteria

• Age: 6 Years - 16 Years
• Sex: all
• Age Groups: Child (0-17)
• Sampling Method: Non-Probability Sample

Study Population

20 schools across Kent, Surrey and Sussex (KSS) will take part in completing a questionnaire to ascertain autism prevalence in KSS. 10 children and young people (CYP) will take part in an interview to find out about their needs in school to inform a quality of life questionnaire to be used by CYP and school staff in schools.

You may qualify if:

• \- Primary and secondary schools in Kent, Surrey and Sussex
• Aged 6-16
• Attends a school in Kent, Surrey and Sussex
• Autism diagnosis

You may not qualify if:

• Nurseries
• Higher education schools
• Schools outside of Kent, Surrey and Sussex
• Children outside of 6-16 age range
• Children without autism diagnosis
• Non-verbal children
• Parent/carer unable or unwilling to agree for their child to take part

Sponsors & Collaborators

• Sussex Community NHS Foundation Trust: lead

Study Sites (1)

Sussex Community NHS Foundation Trust

Brighton, BN2 3EW, United Kingdom

RECRUITING

MeSH Terms

Conditions

Autistic Disorder; Autism Spectrum Disorder

Condition Hierarchy (Ancestors)

Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders

Study Officials

• Sophie McGrevey

  Sussex Community NHS FT

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Helen Vaughan

CONTACT

44 1273 696011; helenvaughan@nhs.net

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 10, 2023
• First Posted: November 15, 2023
• Study Start: September 18, 2023
• Primary Completion: September 18, 2024
• Study Completion: September 18, 2024
• Last Updated: November 24, 2023

Record last verified: 2023-11

Locations

GB (1)